Lavinia De Oliveiria Santos has a condition called IFN-gamma receptor 1 deficiency. Her body is unable to fight off infections, some of which may be life-threatening. Her doctors have told the family that the best possible treatment is a stem cell transplant.
She currently takes six medications a day to help fight against infection. She also receives weekly injections to strengthen her immune system. Obviously, her parents are doing their best to keep the home disinfected in order to minimize the risk of any infection.
Looking For A Match
Her parents are a half match for Lavinia, but the doctors would prefer a 100% match. Her doctors are searching the Be The Match registry for an unrelated donor.
Becoming a potential donor is simple. You can register online by clicking the link. Once the registration is finished online, Be The Match will mail you a swab kit with easy-to-follow instructions on how to complete the process at home. When you return the kit in the mail, you will be included on the registry.
About 1 out of every 430 people included on the registry go on to donate to a patient. Only people identified as a genetic match for a searching patient are asked to donate blood stem cells.
“We urgently need more Latinos to join the registry so my daughter can find a match” -Gilmar Santos, Lavinia’s father
Lavinia’s search for a matching donor is more difficult because of her Brazilian ethnicity. People are more likely to match someone with the same ethnic background. Even though the Be The Match Registry is the largest and most diverse registry in the world, only 7% of the 19 million+ members identify as Latino. Unfortunately, the result is that Latino patients like Lavinia only have a 46% chance of finding a fully matched donor, compared to a 77% chance for those who are White. There simply aren’t enough people of various ethnicities included on the registry. Please add yourself, and ask your friends and family to do the same.
Lavinia turned 6 in July. She loves to dance, sing and play as a princess. She enjoys vanilla ice cream and of course, she loves Brazilian food. Lavinia is crazy about animals and insists that she will be a veterinarian when she grows up. She is a girl with many dreams and we would like to see them all happen.
join.bethematch.org/LoveForLavinia6 year old Lavinia Santos loves to sing and dance and has many hopes and dreams. She also needs your help. Lavinia was diagnosed with IFN-gammaR1 deficiency when she was 2, and needs a stem cell transplant to survive. Her only hope is an unrelated donor, and we are asking everyone 18-44 years old to join the Be the Match Registry to possibly save Lavinia or another patient in need.Just click on join.bethematch.org/LoveForLavinia. You will register and fill out a fast online form and cheek swabs will be mailed. It’s that easy! Please share this post publicly and help Lavinia find her match!❤️
Mikey met with his pediatric CML specialist a few weeks ago and he is doing great! The tyrosine kinase inhibitors (his TKI medication) are working and his chronic myeloid leukemia levels are very low. He starts school next month and his family is very happy.
We are happy also. Way to go Mikey!
Mighty Mikey Sexton – May 16, 2018
Did you know that an orange ribbon promotes leukemia awareness and shows support for leukemia survivors and their family and friends? Orange also happens to be Mikey Sexton’s favorite color. It’s a strange coincidence because seven year old Mikey was just recently diagnosed with CML (chronic myeloid leukemia) and is in need of a bone marrow transplant.
CML is a rare form of blood cancer that typically affects older adults, so it is rarer still to be diagnosed with CML as a young child. It begins in the blood forming cells of the bone marrow, and eventually spreads to the blood. CML is a fairly slow growing leukemia, but it can also change into a fast-growing acute leukemia that is hard to treat.
Mikey’s Mom & Dad
Mikey’s father, Mike Sexton, who is a corrections officer and volunteer fireman says, “he was really tired, kind of pale, and not really acting like himself.” After his diagnosis, and a week at the hospital, Mikey spent 2 weeks at home taking oral chemotherapy drugs.
Mikey and his brother
His doctors believe that a bone marrow transplant will be his only hope for a cure. Mikey’s younger brother was tested, but he is only a 50% match.
This is where the Icla da Silva Foundation steps in. Patients like Mikey, who need a transplant, rely on us to help them find a matching bone marrow donor. We have begun working with Mikey’s family to schedule marrow drives, asking people to join the Be The Match bone marrow registry. You can join the registry by by attending one of our drives, or you can join online, providing basic contact information and some medical history. Be The Match sends out a swab kit, with simple directions to capture your HLA type, and you will be entered in the registry with the hopes of matching a patient in need of a marrow transplant.
There are more than 14,000 patients with various forms of blood cancer who can be saved if they are able to find a matching donor. The online process to join the registry takes 8 minutes. If you match a patient and agree to become a donor, the gratitude and understanding that you saved a life lasts a lifetime.
You can join the registry in honor of Mikey right here, you may be his match.joIN the registry
Another way that you can help is by spreading the word about Mikey’s story. You can share this story by using the links below, and ask your friends to consider joining the registry. If you have access to a larger group of people – through an employer, a club, a school or a church organization, you can host a drive in honor of a patient. We do most of the work, you simply have to fill out the request form here and make the introduction.
You can also help the family directly by making a donation to their personal gofundme page.
Mikey was deemed healthy enough to go back to school, and he couldn’t be happier. This video from his hometown Spectrum News, shows the overwhelming support received at his elementary school.
Warm Welcome to Classmate Battling Leukemia from Spectrum News
Mikey is a sweet boy who loves being with his friends. Although he was very excited to return to school, his parents have decided it would be best for him to attend ½ days, since Mikey is physically exhausted and can’t make it through a full day.
He likes reading, playing hockey and being a tiger scout…and of course, he also loves the color orange. We have high hopes for a matching donor, and when the time is right, a successful transplant. Keep going Mikey!
In Memory: Vivianna Sophia Lane
With tremendous sadness, we were recently notified of the untimely passing of Vivianna Sophia Lane. She died Tuesday, August 7th at the Lurie Children’s Hospital of Chicago. We extend heartfelt condolences to her family, her friends and anyone who was fortunate to come in contact with her. Sophia was a talented, passionate and hard working young woman who was fighting a battle with Acute Lymphoblastic Leukemia. We were working with Sophia and her family in their search to find a matching bone marrow donor. Sophia was 21 years old.
Her family has notified us that they would like us to keep her hope alive; ” if you haven’t done so, please sign up to be a bone marrow donor. One hundred and forty people signed up to save her life, and others. It made her so happy in her last days.”
Vivianna “Sophia” Lane is a 21 year old college student at Lake Forest College, in Lake Forest, IL, a suburb north of Chicago. She is working towards her bachelors degree, a double major in Business and Studio Art.
Sophia is energetic, creative, outgoing and well rounded. She is passionate about art, golf, singing, biking and swimming. She is hard working. Her dedication to golf includes competing on the boys team in high school, caddying, coaching and working at a golf shop. Her devotion to art encompasses volunteering, two internships and her first solo exhibition at the Evanston Art Center.
Sophia also has B cell Acute Lymphoblastic Leukemia. She was diagnosed last year (November 2017), underwent chemotherapy treatments and relapsed just last month (July 2018). Her doctors are working to get her into remission so that she can undergo a stem cell transplant. Sophia does not have a sibling match and will rely on the Be the Match registry to find a lifesaving donor.
We need to find a matching stem cell donor for Sophia. The only way to do this is to ask more people to join the registry.
Joining is easy. Click the link, setup an account with an email and password, and answer a few questions. A swab kit will be sent to your home. Once you swab the inside of your cheek and return it to Be the Match, you are entered in the registry and included in patient searches.
More than 14,000 patients are searching every year. Their cure is inside you. You may save a life.
To find more information about the donation process, please click here.
If you have already joined, please help us share Sophia’s story so that we may get others to consider becoming a potential life-saver.
PATIENT UPDATE: Mission of Joy – Creating Superheroes
In early July of 2017, Aashim Joy was diagnosed with ALL (B-Cell Type Acute Lymphoblastic Leukemia). His only hope for a cure is a matching bone marrow transplant, and we first reported his story here.
Aashim is currently in remission, which is good news, at least temporarily. For leukemia patients undergoing chemotherapy, remission means that there is ‘less’ cancer in the body. Unfortunately, the chance of a relapse, or a recurrence of cancer, remains high and it is important that they maintain their treatments, and continue their search for a matching bone marrow donor.
Aashim Joy lives up to his name, literally. He is in good spirits, always positive and usually ‘joyful’. He is very focused on spreading the word about joining the registry and supporting patient services.
Spreading Awareness / Creating Superheroes
Recently, he attended and spoke at our 5K in NYC, he also talked about his journey at our Mix & Match event last month. If you attended either event, you heard Aashim speak about becoming a superhero. He is on a mission, he wants to create superheroes. He is devoted to educating as many people as possible about the importance of registering to become a bone marrow donor, and staying committed if you are identified as a match for someone. He wants everyone to understand how meaningful it is to save a life and thus, how easy it is to become a superhero.
Working with bone marrow patients for the last 25 years, we know he is right. We understand that reaching out to friends and posting on social media does not generate the numbers necessary to save the many lives who are in need of a matching donor. Try as we may, enough people don’t understand how simple the process of registering is. They fail to recognize that the vast majority of bone marrow donations are neither painful, nor invasive. As Aashim says – “There are a lot of misconceptions associated with bone marrow transplant, and most folks don’t really feel it’s worth the effort to wake up on a Sunday morning and register as a donor.”
Aashim, along with his beautiful and intelligent wife Reema, stand behind this mission, to raise awareness and increase support. From their apartment in NYC, Aashim and his wife have spearheaded many bone marrow drives throughout India. His friends at Deloitte put together a fundraising team and participated as ‘Run For Joy’ in the MatchMaker 5K. Aashim even donated his birthday to the Icla da Silva Foundation, helping our efforts to provide more patient support services to those in need.
Supporting and Fundraising
Aashim donated his birthday by setting up a simple donation page. He went to www.icla.org/get-involved and clicked on “Fundraise with Us.” From this link, he easily developed an online fundraising page. Aashim wrote a short paragraph about his experience, and then posted the link to his Facebook page, inviting his friends and followers to get involved. The fundraiser lasted until his birthday, and raised 120% of the goal! Thank you to Aashim and all his friends and family for taking this extra step to ensure that more patients who need a bone marrow transplant can find a match. You are all superheroes and you are all saving lives!
It’s so easy to start a fundraiser for the Icla da Silva Foundation. Follow the same steps as Aashim, customize your fundraising page, and share with your friends and family. It doesn’t have to be your birthday to get involved. Whether you’re running a marathon, remembering a loved one, or celebrating an anniversary, any time is a good time to be a superhero and help save lives.
You can be a Superhero!
Everyone between the ages of 18-44 can be a superhero. Start by joining the registry in honor of Aashim https://join.bethematch.org/gettestedforjoy. If you want to make a donation to Aashim’s birthday fundraiser, you can still do so here.
Thank you to Aashim, and his wife Reema, for your continued efforts to spread awareness about blood cancers and the power of joining the Be The Match registry; saving a life can make anyone a superhero.
Patient Update: Asaya Bullock
Asaya loves karate, the color blue, and his little sister Anaya. They are best friends and they get along like two peas in a pod. He is a fun-loving little boy who is surrounded by loving parents and the support of family and friends, but he needs your help.
We have been working with Asaya Bullock and his family since 2014. Asaya has been the focus of 163 bone marrow donor drives, where we have registered 2487 potential donors on his behalf, and we continue to stand by his family for emotional, logistical and financial support. Unfortunately, these efforts have not been enough to find his cure.
This beautiful little boy needs your help.
At the age of 8 months, Asaya was diagnosed with a rare autoimmune disease called I-PEX. His parents were told he would not live past the age of two. You can read more about his story here.
In July, Asaya will be 7, which means that he has been living with this rare disease for almost seven years. He is enrolled in first grade, but he misses class often due to his compromised immune system. This past winter was rough on the family; the flu lasted for 6 weeks and Asaya lost a lot of weight. He receives IgG treatments (Immunoglubulin replacement therapy) every other week, administered by his mom so they don’t have to spend so much time traveling to the doctor. The treatments hope to increase the IgG levels in his blood, which to help fight infections.
Asaya is in desperate need of a matching bone marrow donor. His father Vincent is African American, and his mother Charlene is West Indian Caribbean. Unfortunately, Asaya’s ethnicity is under represented in the bone marrow registry. Not enough potential donors have joined, so a match has not yet been identified. Could you be his match? Do you have friends or family that could be a life saving match? Please consider joining the registry here http://join.bethematch.org/TeamAsaya. Share this post with your social media network and ask your friends to join using the links below. Get involved and host a marrow drive in your community to register more potential life savers. Learn how to do that here.
Thanks for reading, registering, and sharing. We need to work together to find a match for little Asaya.
Renata Has Faith
Renata Coimbra is full of life. She is always smiling and spreads joy wherever she goes. She is very close with her family and friends, she worries about those less fortunate, and she regularly contributes to her church and her community. She is recently married, a positive role model, and faithfully leads others in prayer.
Renata was recently diagnosed with leukemia and is in desperate need of a bone marrow donor. She has begun an aggressive treatment of chemotherapy and she knows that she has a long and difficult path ahead, but she has faith that she will find a matching donor.
In 2001, she moved from Espirito Santo in southern Brazil, to Boston, Massachusetts, where she worked as a house manager and loving nanny for 13 years. Missing the tropical climate of her childhood, Renata moved to Florida in 2014, where she met and married her love, Danilo. Together, they enjoy music and movies, regularly attend church, and spend time with Danilo’s family, who has accepted her as their own.
Late last year, Renata was suffering from shortness of breath. After multiple visits with doctors and specialists, she was unexpectedly diagnosed with a lymphoma that had formed in her chest and attacked the bone marrow. It quickly developed into leukemia. She has been told that even with chemo treatments to fight the cancer in her blood, a bone marrow transplant will be necessary to ensure her survival. After multiple treatments and two hospitalizations in the short timespan since she has been diagnosed, she has been forced to quit her job and live a remarkably different lifestyle.
Before she got sick, Renata and Danilo enjoyed dancing and going to the beach on weekends. Although she misses work and her Zumba class, she has never lost faith that she will overcome this disease.
Renata’s faith is overwhelming. Early in the search, they found three matching donors. Unfortunately, none of them were ready to make the commitment to donate. Renata insists that she has the support of God, friends and family, and a matching donor will come through.
While we certainly hope that everyone who registers is able to stay committed if they ever receive the call, it is important to recognize that the vast majority of bone marrow patients require a non-surgical process called peripheral blood stem cell donation (PBSC).
A PBSC bone marrow transplant requires a donor to take injections of filgrastim over the course of 5 days, which increases the number of blood forming cells in your blood stream. On the day of donation, your blood is removed through a needle in one arm, passed into a machine that separates the blood forming cells that your body has produced, and then your blood is returned back into your body through the other arm.
The process is relatively simple.
Please consider registering to become a potential bone marrow donor for Renata and the many other patients who are looking for a match.
We share Renata’s faith that more people will register and stay committed.
We ask you to share Renata’s faith that more people will register and stay committed. Share her story:
Unique Ties That Bind
Charles and his brother William are very unique. Like many other sibling relationships, they love each other, but they still fight. They have many similarities, but at times, they are also polar opposites. They are both avid skiers, but they live in Puerto Rico. And while one brother was suffering from HLH, the other was able to donate his blood stem cells to save his brother’s life.
William Flaherty, the younger brother, was diagnosed with HLH (hemophagocytic lymphohistiocytosis) at the age of 3. HLH is a rare and life threatening condition seen more often in children than in adults. The immune system doesn’t shut off as it should, and begins to go throughout the body attacking the patient’s organs.
The only cure for William was a replacement of his immune system through a bone marrow transplant. The challenge with every bone marrow transplant, is finding a matching donor. While most patients only have a 25% chance of finding a successful sibling match, William’s brother Charles was a perfect match. Those Flaherty boys are unique.
When asked about donating his stem cells, Charles, then 7 years old, was willing, but confused about the process. His parents, Dennis and Ann, shared all of the information with him and talked about the surgical procedure. Every surgery includes concerns, but Charles was ready to have his stem cells harvested so that they could be transplanted to his little brother. When asked about the procedure, he insists that the only discomfort he remembers was taking the bandage off. The surgery occurred on a Thursday; Charles was back in school on Monday.
When asked how they felt, and what was going through their minds during the harvest and then the transplant, both boys have the same perspective. “It’s ancient history…why do you adults keep talking about it?”
Both procedures were successful, and the brothers are happy and healthy, loving and bickering with one another.
When Charles is asked what he thinks now about donating his cells to his brother he says “it really wasn’t that much trouble and I’d do it again in a heartbeat.” When William is asked about his older brother stepping up to save his life, he replies, “it’s cool.”
This year, Charles Flaherty will be competing in the 2018 Winter Olympics in PyeongChang, South Korea. He is the “Mono-Estrellada,” the single star on the Alpine ski team for Puerto Rico; not unlike the single star on the Puerto Rican flag. This year marks the return of Puerto Rico to compete in the Winter Olympics for the first time since 2002.
Charles was introduced to skiing on a father/son trip following the success of his little brother’s transplant. The trip was intended to provide Charles with some special attention, something outside of the ordinary, with a focus on him; something unique.
Charles took to skiing like a fish to water. The family made annual trips to Colorado, and they were able to schedule time with the same ski instructor each year. After a few years, the instructor insisted there was nothing more he could teach Charles recreationally, he should learn to race.
In December, the Puerto Rico Olympic Committee gave their Winter Athletes Federation (FPAI) a 6 month approval of membership, so Charles Flaherty will compete in Alpine skiing at the 2018 Winter Olympics, representing Puerto Rico. With his family behind him, Charles was committed. He continued training, and competed in over 100 races before receiving Olympic Committee approval. We wish Charles well in the Winter Olympics and we are proud of his dedication and commitment to his brother, his family, and to his sport.
We encourage you to root for him and we ask you to consider joining the Be the Match registry and staying committed, just like Charles. If you receive that call, asking on behalf of a patient who needs a bone marrow donation, please remember Charles.
To learn more about how you can make a difference in the lives of patients in need of bone marrow transplants and other diseases such as HLH, click here.
Click the button below to Join the Registry:
It’s Sunny in Chicago
Chicago, the windy city, is known for jazz, Al Capone, deep-dish pizza, and die-hard sports fans. They have the Sears tower, they dye their river green on St Patrick’s Day and there is a warm sunshine that rises from one of it’s Northwest suburbs.
Craig Wisniewski lives in the Northwest suburbs, and that sunshine appears to be coming from his house. Craig has been married to his wife Jean for 42 years; they have a loving, tight-knit family, with 4 children and 4 grandchildren. Craig also has MDS (Myelodysplastic Syndrome), which he claims, “saved his life”.
Craig was diagnosed with MDS in February 2017. He was extremely exhausted, and had shortness of breath. His oncologist didn’t equate these symptoms to MDS and recommended a stress test. Two minutes into that test, they put an oxygen mask on Craig. His carotid artery was 90% blocked. He had to have surgery to clear his artery followed by quadruple bypass surgery. Family, friends, even doctors were surprised that he did not suffer a heart attack or a stroke.
Craig Wisniewski credits his MDS diagnosis with saving his life. In a weird twist of fate, without being diagnosed with MDS, he would not have met with his oncologist, who would not have recommended a stress test, and as a result, he would not have been operated on, twice, in order to save him from a stroke or a heart attack. He is truly grateful.
Now Craig needs a bone marrow transplant to cure his MDS. Based on his heart condition, it is imperative that he finds a 100% match. His three eligible siblings have been tested and none of them were a match. Sibling matches only occur in about 25% of bone marrow transplant cases. His doctor has indicated that finding a match will be extremely difficult due to his Hungarian, Polish and German ancestry. Ethnically diverse patients have a much harder time finding a matching donor within the bone marrow registry.
Craig is extremely aware that he may not find a matching donor, but he wants to use his experience and recent learning about bone marrow transplants to help other people. He wants to raise awareness of the importance of joining the registry and help other patients find their matches. Craig Wisniewski is on a mission. He is a ray of sunshine on a cold winter day in Chicago. Although he is facing one of the most devastating obstacles in his life, he wants to help other people.
Every year, 14,000 patients are diagnosed with cancers such as Leukemia and Lymphoma and can only be cured by a matching bone marrow donation. Be the Match is the largest registry of people willing to donate their bone marrow, and the Icla da Silva Foundation is the largest recruitment center for the Be the Match Registry. Icla da Silva specializes in working with patients who are ethnically diverse and may have a more difficult time finding a match.
You can join the registry, on Craig’s behalf, by using clicking here.
Craig Wisniewski is genuine. When he finished a round of chemo treatments in December, he was grateful just to be able to spend time with his loving family. He is warm, friendly and always joking to make people laugh and feel more comfortable. He sincerely wishes to help others find their match and dispel the myths about bone marrow donation, which prohibit people from registering to become donors and not answering the call if they are matched with a patient.
The process to become a potential donor is simple and more information is available here – 5 Steps of Bone Marrow Donation, but you need to take the first step and register.
The need for a bone marrow transplant happens for patients across all walks of life, regardless of age. More than 80% of newly diagnosed cases of MDS occur in people over the age of 60.
We are grateful for people like Craig and the sunshine that they bring to other people’s lives. Please help us find a match for Craig.
Save a life. Join Now.
Watch Craig’s story:
TIFFANY DAVIS IS STRONG – TIFFSTRONG
Tiffany Davis is a 31 year old woman from Miami Florida. She is smart, beautiful and strong. She is battling cancer for the second time in her life and she refuses to let it beat her. Tiffany is a Warrior. At the age of 28, Tiffany found a small lump under her left arm. She had a family history with breast cancer, her grandmother died from it, but it was never really talked about. She noticed the lump during a self examination and was diagnosed in 2014. It was detected in early stage 2, and was diagnosed as an aggressive form of cancer, described as triple negative. She had chemo, a bilateral mastectomy, otherwise known as a preventive mastectomy, followed by radiation treatments. Since her cancer was ER+ (estrogen receptor positive), she was also put on hormonal therapy. Tiffany is strong and she survived her first battle, but after two years as a survivor, during a routine check-up, her labs came back with abnormal red blood cells and a low platelet count. The oncologist sent her to a hematologist for more tests. After a series of labs and a bone marrow biopsy, it was confirmed on July 31, 2017 that Tiffany had acute myeloid leukemia. This diagnosis was the result of receiving both chemo and radiation for her breast cancer. Tiffany’s best chance of survival is to receive a matching bone marrow transplant.
Tiffany remains strong. She is positive and faithful and she will not give up. She insists that the first cancer changed her. She has become more outspoken, and believes it is important to share her journey and bring more awareness to it. She believes in her strength. At 31 years of age, Tiffany is undergoing chemotherapy again. She has completed phase 1, induction chemo, which consists of 24 hour/day chemo treatment for 7 days. The process clears the bone marrow of leukemia cells, but dramatically affects the immune system and requires a 28 day stay in the hospital. Phase 2 is the consolidation process, where they try to keep you in remission, through continued chemotherapy, until a matching donor can be found.
Finding a matching donor is Tiffany’s next battle.
African Americans have a high propensity to be diagnosed with cancer. About 1 in 2 black men, and 1 in 3 black women will be diagnosed with cancer in their lifetime. Many of these cancers can be cured with a bone marrow transplant. Since African Americans have a greater genetic diversity than other populations around the world, this diversity can make finding a perfect match more difficult. This is further impacted by the fact that the African American community is simply underrepresented in the national bone marrow registry. We encourage you to join the registry and stay committed to helping save the life of a patient in need. You could be the life saving difference. Please register using the TiffStrong referral code at Be The Match.
As a warrior, Tiffany Davis refuses to give up hope. She is thankful for the support of her family and friends and she is grateful to be able to share her journey with others. She has been documenting her thoughts and findings through her Youtube channel:
You can help Tiffany and many other patients looking for a matching transplant by hosting a marrow drive of your own at your company/school/church. Every drive helps us add more donors to the registry, please click here to request more info: https://icla.org/events/host-marrow-drive/
We stand strong with Tiffany and will do everything that we can to help her survive this next battle.
How to Become a Bone Marrow Donor
You could be a life-saving match for a patient in need of a bone marrow transplant. Joining the Be the Match Registry is the first step to become a marrow donor. See our infographic below to learn about how you can sign up to becoming a bone marrow donor and the steps of the donation process.